AVMs of the Cerebellum


AVMs of the Cerebellum


Members: 61
Latest Activity: Aug 11

Discussion Forum

Getting Groceries

Started by multistats. Last reply by Suzy E Aug 9. 10 Replies

When I was in the grocery store earlier today, I remembered the problems grocery stores provided. This problem was true of stores in general, but was particularly true of grocery stores. Those of us…Continue

Tags: grocery, stores, up, throwing, dizziness

dizzy and swollen

Started by Howard. Last reply by Boston Celtics Jun 17. 10 Replies

Hi, Howard here. I am now just about 6 months out from surgery. AVM repaired and Aneurism clipped. Both in my cerebellum. Still quite sick. Very dizzy most of the time which often leads to nausea and…Continue

New Kid on the Block

Started by Rommit2001. Last reply by dancermom Jun 4. 1 Reply

Hi Everyone,I just found this group and hope to see some interesting topics. I had my AVM rupture on 10/19/2013. The one physical issue I continue to batt;e is Ataxia. Through exercise and just daily…Continue

AVM post surgery

Started by Rallie. Last reply by Howard May 4. 5 Replies

HELLO EVERYBODY,I'm new around here.Hope my post gets posted.Wait and see. I saw that somebody mentioned Acupuncture!Does anybody have any experience with that?Or Canabisoil? I had my AVM removed on…Continue

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Comment by Lulu on August 11, 2014 at 9:54am

Thanks so much for your message and your very kind words Suzy E. I really appreciate your support and this site so much. I think you are abslutely right about the positive attitude. It really does help. I'm sure this has played a large part in getting me through life so far. It was a huge shock when I first found out that I had Hydrocephalus and an AVM. I don't hear of many people suffering from both conditions. I worry a lot about both of them and wish I could just press a button and have them gone. But I have also sort of accepted them as part of me. Even if my AVM was obliterated the drs aren't sure if the Hydrocephalus would go. So I may be stuck with it. I have loved hearing your story and positive outcome. With very best wishes.

Comment by Suzy E on August 8, 2014 at 6:17pm

Mollybaby's post back in March about her husband's personality brought back my fear of a personality change. Yes the experience can be horrible and lead to mood swings (but I hesitate to say I know everyone's experience). However, is my firm belief that one's personality is not changed, at least not in my journey. Yes, I had to learn how to walk again and how to do physical things that were always second nature prior to the surgery, but my personality remained (some would say that is not such a good thing...lol). Sometime after the surgery, I got my MBA and found supportive things (like giving back on this site) that I was good at and slowly left some of the physical things behind. My sense of humor remained, and who I was has always been there. That was all I cared about. Be kind to yourself, you are a survivor. I had to keep telling myself that and you should too. ::: getting down from my soapbox now :::

Comment by Suzy E on August 8, 2014 at 6:02pm

Thanks for your kind words Lulu. I was able to read through your profile and although my AVM was removed at the end of 2006, yours is still active. While I understand risky surgery (surgery is always a very personal decision and has so many factors to consider) and the hydrocephalus on top of it, it still must be very scary for you having the AVM there. Considering these circumstances, your positive attitude despite is commendable. These people on this site understand and applaud this (a positive attitude) and I sincerely believe has much to do with its success and growth. Long story much longer, you are awesome! Contact me anytime!

Comment by Lulu on August 7, 2014 at 3:41am

Hi Suzy E. Your positive attitude is just brilliant. AVM'ers can and do get through this and I really do think that maintaining a positive attitude is essential. My own AVM is unruptured and untreated. But every day I am thankful for what I have and I also aim to keep positive and look on the bright side of things. All the best to you.

Comment by Suzy E on August 6, 2014 at 11:53am

While my AVM did not rupture (thank goodness), the craniotomy (back at the end of 2006) had some long-standing effects and resulted in learning how to walk again, constant vomiting, etc. (running is out, so much for soccer). But fast forward to now, a sense of humor is a must. I am driving now (relax, its a four-wheeled vehicle, and accepting what I can no longer do and finding alternative things to take their place. While there is plenty bad that can be focused on in this AVM journey, the AVM itself has been a blessing. Let me try to explain. I have slowed down. I know who my true friends are and most importantly, the experience has given me the opportunity to look at things from a whole other perspective. This is where the sense of humor thing comes full circle. I believe your experience on this journey is your choice, and I choose humor. Much better than the alternative. Anyway, such is my intro. Stay as positive as you can everyone and try to fill in the gaps with laughter.

Comment by Julie on May 20, 2014 at 11:50am
BTW -thank you!
Comment by Julie on May 20, 2014 at 11:49am
Hi Lulu, I'm AVM-free as of 2008-2009. I can't say that I miss it:)

Things will get better. Sometimes it takes some time; stay focused on the positives, though. It helps a bunch.
Comment by Lulu on May 20, 2014 at 3:10am

Thanks for sharing Julie. You sound very brave. Best wishes for your continued recovery. Do you still have your AVM?

Comment by Julie on May 19, 2014 at 10:31pm
I had a rupture and then in a coma for a few weeks.

It was quite a change: one minute, I was doing MarCom stuff and teaching ballroom dancing; the next I was struggling to press the nurse's button in a hospital bed. Very bizarre, to say the least.

I saw most of my progress in the first year; everyone's different, but I think that much is a pretty standard goal to work especially hard during that crucial time.
Comment by Lulu on May 19, 2014 at 8:34am

Thanks Julie. Did you have treatment or did your AVM rupture?


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Blog Posts

26 Years!

Posted by Barbara H. on August 3, 2014 at 10:00am 12 Comments

My life changed 26 years ago today. Most people when they write that sentence...it usually means a marriage or a birth of a child. In my case, I suffered an AVM rupture and lived! Although completely paralyzed on one side...I learned to crawl...sit… Continue


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